Second Opinion Choices: Roswell or Dana-Farber

beewell

Hello Everyone.

This is my first post and after a lot of reading, lurking and researching on my own I decided to finally ask this incredible community for help.

I beg for some patience. Some background:

I went for a routine mammo, then ultrasound in 2016, then was told to come back in 6 months. I didn't think anything of it since the radiologist said he wasn't concerned but to come back.

Returned in 6 months and was told I needed a core biopsy (what is that?) Had the biopsy about 2 months ago (still with a hematoma). Results "rare foci of ADH and focal ALH". Size from what I remember from convo with radiologist is 2mm. There are absolutely no details on my pathology report just these vague notes ("Addendum"). Then, in all caps, "CONSIDER SURGICAL REFERRAL FOR EXCISION". Thankfully I didn't see that note until after I requested my images. Geez.

My Obgyn called to tell me I need to meet with a surgeon to possibly "scoop it out". I panicked and she wanted to know right away who I wanted to see for a consult. They made an appoint. with a random person and so after I get a recommendation from a friend, cancelled that one and had to wait until earlier this month to meet with this surgeon (discovered she is a general surgeon who specializes in other organs/tissue; not a breast surgeon oncologist).

Didn't connect and her nurse made things worse. They recommended a breast MRI but felt rushed. I have since learned there are a lot of false positives apparently due to getting the images made without considering the timing in your menstrual cycle. They never asked about my menstrual cycle. The surgical nurse also told me I have a 50% chance of getting BC so I better do the MRI. (Panic, anxiety, you name it). She made it seem like this was a major emergency.

(Note: My radiologist, who I like and trust, recommended a breast MRI as early as 6 weeks and as late as 6 months. And then decide what to do. Of course, he wasn't expecting my hematoma to still be around either which I've learned can make an MRI harder to read.)

So … after that horrid experience I decided to research more and get a second opinion. But from where?

Fortunately, I live a driving-distance away from several great comprehensive cancer centers: Roswell, Cleveland Clinic, Dana-Farber, Memorial Sloan-Kettering … This is a great thing but also overwhelming.

I think I should just start at Roswell and then get a third opinion if needed at Dana-Farber or Cleveland Clinic. MSKK seems like a great place but getting to NYC stresses me out.

ADH/ALH isn't an emergency, right?

If you've been to Roswell, Dana-Farber or Cleveland Clinic, I would love and be so grateful for your feedback. I'm new and. not hiding my head in the sand. Wanting some closure (at least for the short term and hoping for the long term, if that makes sense :-)

Thank you.

MTwoman

beewell, I don't have any specific useful information on ADH/ALH or those clinics in particular, but you are right this isn't an emergency. You have plenty of time to find a breast surgeon and have an mri. BTW, I had a pretty large hematoma from my lx, when I had my mri, and it didn't cause any problems or make it harder for them to find 2 other areas of dcis. Hopefully some others will come by with more info to help. Good luck!

meg2016

I travel a long distance to go to Dana Farber. I went originally for a second opinion, but was so much happier with my team there and the approach that I decided to travel there for all treatment. For me it was between DF and MSK, I felt like Boston was logistically easier to deal with (and the quality of care was equal.) I am so glad I made the decision to go. If you are within driving distance, I would do one of those two. It will put your mind at ease and hopefully avoid having to get a third opinion at all. Feel free to message me with any specific questions, happy to help.